Caring for Caregivers in an Aging Society: Contributions of Nursing Research to Practice and Policy
Laura N. Gitlin
“The visiting nurse is coming today. Just what the doctor ordered (after I told him this is what we need!).”
“Mom is weaker and having trouble supporting herself in a standing position. Weakening seems to be happening faster than we knew. Never a dull moment. I love our visiting nurse.”
“Hospice nurse is coming. Mom was having trouble breathing. She seems to have quieted down after a 2nd small dose of morphine. The gasping was scary.”
These excerpts of e-mail communications, from a daughter caring for her mother with dementia to a family member, provide a small window into some of the daily care challenges families confront and the important roles of nurses. Family members, broadly defined as friends, fictive kin, or neighbors, have been, are now, and will continue to be in the future the primary providers of care to older adults with unmet needs or physical or cognitive limitations (Bookman & Kimbrel, 2011; Pruchno & Gitlin, 2012).
Family involvement in the care of older adults is a global phenomenon occurring across all socioeconomic levels, within all racial and ethnic groups, and in low-, middle-, and high-income countries. In the United States alone, estimates of the number of families providing some form of care to an older adult range from a high of 65.7 million (28.5% of the U.S. adult population), most of whom are providing care to adults 50 years of age or older (National Alliance for Caregiving and AARP, 2009), to a low of 3.5 million informal caregivers providing unpaid care to people 65 years or older, as identified in the National Long-Term Care survey (National Institute of Aging and Duke University, 2004). According to the National Study of Caregiving (NSOC), a population-based companion survey to the National Health and Aging Trends Study (NHATS), approximately 17.7 million individuals were caregivers of older adults (≥ 65) in 2011 due to poor health or functioning, with close to half (8.5 million) providing help with two or more self-care needs to older adults (Spillman, Wolff, Freedman, & Kasper, 2014).
Although prevalence estimates may vary based on definitions of caregiving and survey methodologies (Giovannetti & Wolff, 2010), there is strong consensus that the number of older adults in need of caregiving, and consequently the need for and number of families providing care, will only increase as the population ages (Stone, 2015). How nursing supports the efforts of family caregivers in diverse health care settings has been and will continue to be an important focal area of concern in research, practice, and policy. The purpose of this chapter is to provide foundational knowledge about family caregiving from which to understand its implications for nursing. First, key societal drivers that place families front and center in the care of older adults and the range of responsibilities families commonly assumed are described. Then, care interventions to support family caregivers and the principles they are based upon are discussed. Finally, the key competencies for nurses in interacting and engaging with and supporting family caregivers are identified, along with policy implications.
SOCIETAL TRENDS PLACE FAMILIES IN THE FOREFRONT OF HEALTH CARE
Several key pressing societal trends have placed families in the forefront of providing, coordinating, or overseeing long-term care and services for older adults; this is why nursing needs to carefully attend to and support family caregivers, now and into the future. Of most significance is the unprecedented and dramatic demographic shift toward an aging society that is under way in the United States and globally (Ortman, Velkoff, & Hogan, 2014). Whereas today 8.5% (617 million) of the world’s population is 65 years or older, this number will leap to almost 17% (1.6 billion) by 2050 (He, Goodkind, & Kowal, 2015). This demographic phenomenon is rapidly sweeping high-, middle-, and low-income countries alike (Beard et al., 2015). As living longer is typically accompanied by age-related deficits, chronic disease, disability, and frailty, most older adults can expect to need some form of assistance during some part of their later life, placing increasing responsibilities upon families to provide this support (B. Coleman & Pandya, 2002; E. A. Coleman, Boult, & American Geriatrics Society Health Care Systems Committee, 2003; National Alliance for Caregiving & AARP, 2009).
Secondly, improvements in medical advances, coupled with shorter hospital and rehabilitation stays accompanied by the expansion of home care technologies, have moved health care from medical centers to homes or residences of older adults. For example, care delivered in the home by nurses versus the hospital results in shorter recovery time, fewer complications, and reduced rehospitalizations even for frail older adults (Leff et al., 1999; Leff & Burton, 1996). Furthermore, emerging medical models such as hospital at home, hospice home care, collaborative primary care models, and care transition models—which all involve nurses at the helm directing, managing, or coordinating care—all assume that a family member will serve as the primary caregiver who will be present and responsible for carrying out care responsibilities at home.
Third, unfortunately, health care organizations and systems of care, particularly in the United States, continue to be based upon an acute care medical model. This, combined with the lack of an integrated, coordinated system of long-term care for older adults, continues to systematically preclude recognition of and an adequate response to the complex, unique, and elongated needs posed by chronic conditions and multimorbidities that present as people age (Aronson, 2015). Common conditions such as heart failure, diabetes, vision impairments, cancer, HIV, and multimorbidities, for which nurses are again in the forefront of managing and overseeing patient self-management, are not responsive to quick fixes, a magic pill or silver bullet, or singular treatments; rather, they require ongoing care, attention to their functional consequences on daily activities of living, and an understanding and evaluation of the social and environmental living space and how it supports, or not, everyday healthy living.
A fourth key and striking trend is the changing structure of families, along with the shrinking pool of family members who are or will be available and able to provide care to older adults. This trend is due to the confluence of several factors: low birth rates (e.g., families are having fewer to no children or having children later in life); geographic mobility and dispersion of families (e.g., fewer families live in geographic proximity to an aging relative); and more women than previously in the workforce (National Academy of Medicine, 2016; Stone, 2015).
These dominant societal features are punctuated as well by an increasingly diverse aging population. Consequently, family members reflect assorted cultures, values, beliefs, practices, preferences, living conditions, literacy levels, and so forth (Gaugler & Kane, 2015). Thus, there is no doubt that nurses now and into the future will need to interact with, include, and elicit the support of highly dissimilar family members throughout or at some point in the course of their own professional lives. These trends also portend that a new science of nursing caregiving is necessary. As families are and will continue to be integral to the fabric of long-term care for older adults, some of the key areas of nursing science with practice implications concern the following: developing, evaluating, and implementing ways to effectively and efficiently identify and engage diverse older adults and families in care decision making; examining the complex psychological, physiological, health, financial, and social effects of caregiving for different conditions and disease trajectories of older adults; and deriving and implementing evidence-based clinical tools for evaluating the capacity of families to engage in expected care tasks and strategies for training and supporting them.
WHO IS A FAMILY CAREGIVER?
Who is a family caregiver is not a straightforward or easy question to answer. The answer often depends upon how caregiving is defined, which has resulted in different prevalence rates and perspectives of roles, responsibilities, and outcomes. As the term “caregiver” is a social construct, families providing care may or may not self-identify as such. Some families reject or do not relate to the term “caregiver,” as they consider their role to be a “natural” part of their relationship with their spouse, parent, sibling, friend, or another relative, despite the fact that they are providing assistance commensurate with traditional definitions of a caregiving role. This poses tricky methodological challenges concerning how to effectively identify a family member who is providing care for research or clinical purposes, and how to document caregiving needs in electronic medical records or elsewhere for tracking and identifying appropriate services and support.
Research studies of family caregivers tend to include and evaluate those who self-identify as a “caregiver” and who are able to volunteer their time for study participation, thus potentially limiting our understandings of caregiving to this self-selective group. Individuals who self-identify as a family caregiver may differ in important ways from those involved in the same level and type of care but who do not self-identify as such. For example, study volunteer caregivers, when compared to those who qualified as a “caregiver” in a random-digit-dial survey of families but who did not volunteer, reported higher levels of education and income, were more likely to be married and living with the older adult, more likely to be caring for an older adult diagnosed with dementia or having greater cognitive difficulties, have significantly higher levels of caregiver burden and increased depressive symptomatology, and report more negative and fewer positive relationships with their older adult (Pruchno et al., 2008).
Complicating the landscape as well is the fact that nurses and other health care providers, in addition to researchers, label families differently depending upon the role a family caregiver is perceived to have in a medical encounter. For example, families attending physician appointments with an older relative may be referred to as a “medical visit companion” or “companion” (Wolff & Roter, 2008; Wolff, Boyd, Gitlin, Bruce, & Roter, 2012); families involved in helping older adults transition from hospital to home may be referred to as “informal caregivers” (Burton, Zdaniuk, Schulz, Jackson, & Hirsch, 2003; E. A. Coleman, Parry, Chalmers, & Min, 2006; Vickrey et al., 2006); families who provide medical information for older relatives with cognitive impairments in particular and for diagnostic purposes are often called “proxy” or “key” informants; families involved in end-of-life care or individuals who are incapacitated are called “proxy decision makers” (Winter & Parks, 2008). Nomenclature has research, practice, and policy implications. How we recognize and label family members providing care to older adults in research, practice, or policy affects the way in which they are identified, treated, and integrated into care planning and decision making, as well as their access to supportive interventions including education, counseling, and skills training when needed.
So, who are family members that assume caregiving? Previously, family caregivers were distinguished from formal caregivers with the distinction of providing “unpaid” assistance for a relative; however, this definition is no longer viable because of the relatively recent federal and state programs offering financial offsets or stipends to families (e.g., Money Follows the Person), the rise of familial arrangements in which one member is paid by others to assume caregiving responsibilities, and the recognition of the economic value and toll of family caregiving. Some surveys or research studies narrowly define caregivers as family members providing a particular high level of care provision (e.g., certain number of hours per week or assistance with one or more basic self-care activities). But these boundaries do not reflect the full range of care needs of older adults and consequently the wide array of tasks that family caregivers commonly assume (discussed later; Reinhard, Levine, & Samis, 2012).
Broadly speaking, family caregiver refers to a relative, spouse, friend, neighbor, or fictive kin, who provides “extraordinary” physical and mental health support to an older adult who has a vulnerability due to a health condition(s) or disability of some sort requiring assistance, including end-of-life care. As caring is of course core to the essence and definition of being a family, the term “extraordinary” differentiates “caregiving” from normative cultural expectations and everyday practices in which families “care” for each other.
Using this broad definition, we find that most family caregivers are still women in their forties (Schulz & Tompkins, 2010; Wolff, Spillman, Freedman, & Kasper, 2016). As coined by Dr. Brody (2003), this “woman in the middle” typically juggles both childcare and eldercare, as well as possibly the care for more than one impaired parent or relative, in addition to employment and increasing responsibilities and pressures at work (Gaugler & Kane, 2015).
Although this reflects the average profile, there are noteworthy exceptions and a changing demography. First, more men are assuming care responsibilities than previously; this is particularly the case in dementia care, in which over 40% of caregivers are male (Alzheimer’s Association, 2016). Second, there is a growing group of long-distance caregivers, although the precise number is not clear (Gitlin & Schulz, 2012). Third, caregiving is not a sole-source job; rather, it is typically a family matter with specific responsibilities often dispersed or delegated to different members. However, there is little understanding of how one person in a family network becomes a primary caregiver, nor how delegation and care decision making occurs among multiple family players.
Characteristics of caregivers also vary by level and type of care provided. Wolff et al. (2016) report that family caregivers providing “substantial help” (defined as assistance with care coordination and medication management) are more likely to be older, and less likely to report having excellent health.
Finally, it cannot be overstated that a defining characteristic of family caregivers as a whole today is their extreme diversity, including but not limited to their race and ethnicity, geographic location, cultural beliefs and values, literacy, care practices, and preferences.
The implications for nursing are manifold. First, in clinical practice, when interacting with a family caregiver, consideration must be given to life trajectory or the point in a person’s life in which he or she is needed to provide care. The caregiver role may intersect with other life expectations such as raising children, caring for other family members, work and/or leadership responsibilities, and attending to personal needs for self-fulfillment, health, and well-being.
Second, future nursing research will have to examine who within families assumes the role of caregiver, how life-span dynamics and the health of the caregiver shape this decision and care decision making in general, strategies for maintaining or restoring the health of family caregivers, and how the health condition of the older adult affects the health and well-being of family caregivers. This will require a population perspective, longitudinal designs, and incisive attention to diversity.
WHAT DO FAMILIES DO?
As families form the backbone of health care systems worldwide, and particularly in the United States in which there is not a coherent system of long-term care (Institute of Medicine, Committee on the Future Health Care Workforce for Older Americans & Board on Health Care Services, 2008), understanding the range of tasks and responsibilities families assume is important. Family care responsibilities are highly varied depending upon (of course) the health, living conditions, and needs of the older adult, as well as the abilities, resources, and geographic proximity of the family caregiver. Family caregiver involvement can be broadly categorized as being either episodic, transitional, long-term, or a combination thereof and involving emotional, financial, coordination, and/or instrumental support (Gitlin & Wolff, 2011). Episodic assistance may include, but is not limited to, transporting and/or accompanying older adults to physician appointments, shopping, housekeeping, financial managing, checking in or monitoring housing conditions for safety, or refilling and monitoring medications periodically (Wolff et al., 2012; Wolff & Spillman, 2014). Transitional care responsibilities may involve helping older adults move safely from one care setting to another (hospital to rehabilitation to home, or home to adult day services), and participating in medication reconciliation and compliance (Gitlin & Wolff, 2011). Finally, long-term care typically includes hands-on assistance in instrumental and basic self-care interspersed with episodic and transitional care responsibilities (Schulz & Tompkins, 2010). Even with hospitalization or nursing home or assisted living facility placement, family care responsibilities continue with new tasks, including ensuring that quality of care is provided, coordinating input and decision making across settings and health providers, providing social and emotional support, and attending to instrumental and possibly self-care activities of living (Gitlin & Schulz, 2012).
How families come to assume caregiving may vary depending upon their own resources and abilities as well as the condition and needs of the older adult. As to the latter, for chronic conditions such as diabetes, heart disease, or dementia, family care responsibilities may start slowly, involving periodic or episodic assistance such as providing reminders about medication taking or doctor’s appointments to accompanying older adults to medical visits or assisting with shopping and/or finances. Then, with disease progression, more time in caregiving may be needed and involve hands-on assistance, moving from assistance with instrumental activities of living (shopping, medication management, household repairs) to providing supervision and then hands-on care with activities of daily living (e.g., bathing, dressing, toileting, eating). There is an incremental increase in care responsibilities and time spent, as well as the emotional, physical, and financial tolls that may be experienced (Gitlin & Schulz, 2012). Alternately, care responsibilities may be assumed abruptly, such as in the case of an older adult with a sudden stroke or acute acerbation of heart disease for which there are physical, cognitive, or other sequelae that trigger the need for more assistance. Here there may be a sharp bifurcation: one day a family member is not a caregiver, and the next, he or she is.
Over the course of caregiving for an older relative, whether care provision is sudden or incremental, a family caregiver may at some point provide care coordination, care transitions, hands-on assistance with instrumental and basic self-care, health-related services such as medication management and administration, wound care, financial support or management, and/or on-site or long-distance monitoring, as well as emotional and social support (Aneshensel, Pearlin, Mullan, Zarit, & Whitlatch, 1995; Schulz & Tomkins, 2010).
A distinguishing feature of caregiving today compared to previous decades is the complexity of care tasks families are expected to assume. These may include changing and cleaning feeding tubes; administering injections; engaging in wound care; attending to psychiatric conditions such as apathy, depression, hallucinations, or other behavioral disturbances; and/or overseeing or carrying out complex medication regimens. These tasks are typically carried out with little to no training, recourse, or ongoing counsel or support (Reinhard et al., 2012).
WHAT ARE THE CONSEQUENCES OF PROVIDING CARE TO OLDER ADULTS?
Both positive and negative consequences of providing care to older adults have been reported in the research literature. An emerging body of research shows that family caregivers may actually be healthier and live longer than non-caregivers (Brown & Brown, 2014). Similarly, other studies have documented positive outcomes such as an enhanced sense of mastery, improved relationships, or feeling that one is fulfill-ing an important obligation and giving back (Roth, Dilworth-Anderson, Huang, Gross, & Gitlin, 2016). However, it remains difficult to tease out if family caregivers are healthier prior to assuming the caregiver role, or if it is the act of caring itself that improves health and possibly longevity; it may be, for example, that only the strongest and most robust members of families become caregivers.
Families also may assume care tasks at great cost to themselves (Adelman, Tmanova, Delgado, Dion, & Lachs, 2014). These consequences are amply documented and may include, but are not limited to, financial strain, distress, depressive symptoms, missed doctor’s appointments, poor health, loss of work, and/or social isolation (National Academy of Medicine, 2016). A wide array of factors shape the experience of caregiving, whether it be positive, negative, or both, including the condition of the older adult, type of assistance needed, familial resources, gender, age, education, finances, relationship, and so forth. Dementia caregiving, however, remains the most challenging, with this group of caregivers having higher rates of depressive symptoms, stress and burden, and poor health compared to caregivers of older adults with other conditions (Ory & Hoffman, 1999; Schulz, O’Brien, Bookwala, & Fleissner, 1995).
Presenting clinical features also shape the caregiving experience and outcomes. For example, families caring for persons with dementia and managing behavioral symptoms (rejection of care, agitation, aggression) have higher rates of depression compared to those caring for persons without these symptoms. Also, as physical function declines, stress and burden increase along with time allocated to caregiving for dementia caregivers (Jutkowitz et al., in press; Okura & Langa, 2011).
The economic toll of caregiving on families should not be underestimated, although the impact of this stressor on health and well-being is unclear. Although it is difficult to identify the precise economic contributions of family caregiving, it is estimated at $470 billion per year in the United States (Reinhard, Feinberg, Choula, & Houser, 2015). This is more than total Medicaid spending in 2013, including both federal and state contributions for health care and long term, which was estimated to be $449 billion, and greater than the total out-of-pocket spending on health care in 2013 estimated at $339 billion. Out-of-pocket health care expenses seem to vary by the condition of the older adult, with dementia caregiving presenting as one of the most costly to families (Alzheimer’s Association, 2016; Delavande, Hurd, Martorell, & Langa, 2013; Jutkowitz et al., in press). Out-of-pocket costs also vary by symptomatology, with functional limitations versus cognitive decline or behavioral symptoms resulting in higher personal costs (Jutkowitz et al., in press).
Despite the magnitude of caregiving, whether episodic, transitional, long-term, or a combination thereof, families often provide care and make care decisions without the benefit of effective training, support, or requisite knowledge and skills. Although most families accept caregiving responsibilities unconditionally, society at large, health care organizations, and providers also presume that families will de facto provide and ensure safe and effective care for an older adult regardless of ability, resources, employment, or other responsibilities. This societal push places families in a tenuous position; it enforces that care responsibilities will be assumed by a family member without determining whether that individual has the necessary resources and capacity. This is disturbing, as many care tasks that families are expected to take on can be complex, such as medication reconciliation and administration, wound care, toileting, dressing, and transferring. Nor are the health, resources, employment status, and needs of family caregivers themselves assessed, recognized, accommodated, or addressed (Family Caregiver Alliance, 2006). Families also may be vilified by health professionals; they can be perceived as not doing enough, as not providing good care, or as “pushy” or interlopers when advocating for their relatives. The lack of attention to and support of and sometimes disdain for caregivers may not only cause undue familial distress, but also compromise quality of care and outcomes for older adults as well (Marx et al., 2014; Stensletten, Bruvik, Espehaug, & Drageset, 2014; Wolff, Clayman, Rabins, Cooke, & Roter, 2015).
Obtaining the right balance between familial and societal responsibilities has significant policy implications. Moreover, how nurses interact with and impact this complex web of health system failures in long-term care, and attend to the needs of both family caregivers and older adult “patients,” remains uncharted territory (Wolff, 2012).
CARING FOR THE CAREGIVER
The past 30-plus years have yielded a significant body of research on family caregiving, focusing on who they are, what they do, consequences (both positive and negative), unmet needs, and supportive interventions (Callahan, Kales, Gitlin, & Lyketsos, 2013). This substantial evolution of research and knowledge generation from descriptive to exploratory and correlational to a focus on intervening to enhance caregiver outcomes is impressive, although more research is certainly needed, particularly as it concerns understanding the changing dynamics and demographics of caregiving, its physiological effects, and best practices for engaging families and intervening to support them. The role of technology and web-based methods for supporting nurse–caregiver interactions in particular is promising, yet undeveloped (Kales et al., 2016; Solli, Hvalvik, Bjørk, & Hellesø, 2015), and more research is needed to develop and test clinical tools to systematically and effectively involve family caregivers to participate in medical encounters (Family Caregiver Alliance, 2006; Wolff et al., 2014).
Of particular importance is the varied array of interventions that have been developed and tested with families and which have immediate, practical application. Taken as a whole, a wide range of interventions have been tested, including education, counseling, care management, and skill building. Collectively, studies report an array of important positive benefits for family caregivers, such as reducing stress, burden, and depression; improving knowledge and skills; and enhancing self-efficacy and mastery (Adelman et al., 2014). Additionally, many interventions targeting family caregivers also result in benefits to older adult recipients—that is, intervening with families can also improve the quality of care and outcomes for older adults as well (Brodaty & Arasaratnam, 2012).
While most intervention research has been conducted with dementia caregivers (Gitlin & Hodgson, 2015), the few focusing on other conditions such as cancer (Northouse, Katapodi, Song, Zhang, & Mood, 2010) are equally promising, although much more intervention research for specific conditions (e.g., stroke, heart failure, multimorbidities) is warranted.
Nursing-based interventions in particular are critical for addressing the wide range of needs of families and for a variety of care settings. Figure 11.1 provides a social ecological conceptualization for understanding nursing-based interventions that can be used to guide future development of interventions, evaluate implementation potential of current interventions, and change practices and policies.
FIGURE 11.1 Social ecological model of family caregiving and nursing interventions. SES, socioeconomic status.
The framework suggests that nursing interventions are embedded within multilayered systems and interacting components or levels of influence that also change over time. These factors and layers of influence include nurse interventionists and what they bring to the care situation, such as their previous experiences and know-how, their competencies working with families, and their clinical reasoning and theoretical frameworks guiding their interactions; older adults with impairment and their demographic, physical, and psychological health profile, as well as cultural beliefs and practices; the family caregiver(s) and their resources, abilities, knowledge/skills, and demographic profile, along with where they are in their own life course; the social and physical environment or setting in which an intervention takes place and the barriers and supports it offers; the community, neighborhood, health care organization, and workplace and their barriers and support for interventions, as well as the health policy and organizational environment, such as reimbursement, staffing, and administrative policies that may directly and indirectly impact the dynamics of delivery and outcomes of an intervention (adopted from Gitlin & Czaja, 2016).
The Care of Persons With Dementia in Their Environments (COPE) intervention for dementia caregivers can be used as an exemplar to understand the significance of this conceptualization (Gitlin, Winter, Dennis, Hodgson, & Hauck, 2010). COPE sought to support capabilities of persons with dementia by reducing environmental stressors, and enhancing family caregiver skills and improving caregiver well-being. In this multicomponent intervention, families receive up to 10 sessions over 4 months by occupational therapists (OT); and 1 face-to-face session and 1 telephone session by an advanced practice nurse. OTs initially interview caregivers to identify patient routines, previous and current roles, habits and interests, and caregiver concerns. OTs also conduct cognitive and functional testing to identify patients’ strengths and deficits in attention, initiation/perseveration, construction, conceptualization, and memory. OTs then train caregivers to modify home environments, daily activities, and communications to support patient capabilities, use problem solving to identify solutions for caregiver-identified concerns, and stress reduction techniques to address their own upset and distress. For each targeted concern, a written action plan is provided, describing treatment goal(s), patient strengths, and specific strategies. In a home visit, the nurse provides caregivers with health-related information (pain detection, hydration, advance directives), obtains patient blood/urine samples, and examines patients for signs of dehydration. Laboratory evaluations include complete blood count (CBC), blood chemistry (Chem 7, thyroid testing of serum samples), and culture and sensitivity of urine samples. Patient medications are reviewed for appropriateness, polypharmacy, and dosing using published guidelines. Caregivers are informed of results by telephone and mailed copies to share with the patients’ physicians.
Results from the nurse component alone of the intervention revealed that more than a third of dementia patients had an undetected but treatable medical condition that may have been contributing to their poor functioning and behavioral symptoms (Hodgson, Gitlin, Winter, & Czekanski, 2011). COPE is currently being replicated in the state of Connecticut in home-based community and Medicaid Waiver programs (Fortinsky et al., 2016). Similar to the main trial, of the first 36 persons with dementia evaluated by the nurse interventionist, 36% had a medical or medication issue (Fortinsky et al., 2016).
This intervention illustrates the important role of nursing interventions. Applying the conceptual framework, it shows that this particular intervention attends to both older adults with dementia and caregivers. Thus, the nurse interventionist has to adjust his or her clinical style, approach, and interactions to successfully build rapport along a number of factors listed in Figure 11.1, including the caregiver’s level of readiness, or receptivity to learn new strategies for caregiving (Gitlin & Rose, 2016). The intervention occurs in the home, so issues related to accessibility, obtaining blood and urine samples in potentially contaminated environments, and constrained spaces have to be considered. The intervention also involves collaboration with another health professional, OTs, requiring skill and competencies in traversing different languages, conceptual frames of references, and treatment goals (Hodgson & Gitlin, in press). As the workplace was in neighborhoods, access, safety, parking, weather conditions, and time of day were all considerations. Finally, reimbursement or financial support for the nurses’ time to travel to homes, provide the needed education, and engage in a clinical evaluation of the person with dementia are all affected by current health policies and the organization of health care such as home care. These factors have significant implications for the spread, uptake, and adoption of the COPE intervention (Gitlin & Czaja, 2016). Knowledge of the characteristics of each of these factors and levels can inform the construction of an impactful intervention.
Using this conceptual framework, several guiding principles for nursing intervention research can be derived. First, interventions must be understood as occurring within a context that includes multiple levels—the individual, the caregiver, the setting in which the intervention will be delivered (e.g., home, clinic, workplace, hospital), formal and informal networks and social support systems, the community, and the policy environment. Health and behavior and hence intervention delivery characteristics may be shaped by factors at each of the levels.
Second, interventions are more likely to be successful and sustainable if factors in each level and the interactions among them are considered. Interventions cannot be designed in isolation or in a vacuum and solely focus on individual-level determinants of health and behaviors. Rather, interventions must consider the independent and joint influences of determinants at all of the specified levels. Levels will be proximal and distal to the immediate outcomes sought (e.g., improving knowledge and skills among diverse family caregivers).
Third, the levels and the interactions among them are dynamic, and determinants may change with time. Therefore, for interventions to be sustainable, their characteristics must be adaptable to potential changes and dynamic relationships over time.
Figure 11.1 also implies that new competencies for nurses may be needed. This includes viewing the family unit as the “patient” or “client” versus the older adult alone; the need to integrate quality indicators such as quality of care and quality of life into national performance measurements along with changes in reimbursement mechanisms to accommodate time spent with the family caregiver; the need for nurses to understand their role on an interprofessional team, the complexities of caregiving, and how to communicate information to families in a supportive and nonjudgmental way. Also, implicit is the need for the use of multidimensional assessments in order to match resources to family needs and the care of older adults and from which to identify strengths of a family caregiver and from which to derive culturally appropriate instructional approaches and care strategies. Finally, the inclusion of family caregivers as part of the unit of care has significant implications for training; new training curriculum in nursing programs is needed to instruct in evidence-informed practices for effectively involving families in care decision making, as well as how to manage family conflict and the involvement of more than one family caregiver or when family members have differing perspectives, treatment goals, and involvement (Gitlin & Hodgson, 2016; Kelly, Reinhard, & Brooks-Danso, 2008).
Regardless of condition of the older adult and/or type of assistance needed, nurses have a critical role in intervening to support family caregivers in any context of care. Table 11.1 outlines some of the key areas of knowledge and skills that families need and which nurses can provide.
TABLE 11.1 Knowledge and Skills That Family Caregivers May Need and That Nurses Are Instrumental in Providing